Lorenzo Odone, 30; Struggle Inspired 'Lorenzo's Oil'

Lorenzo Odone, 30; Struggle Inspired 'Lorenzo's Oil'

By Martin Weil
Washington Post Staff Writer
Saturday, May 31, 2008; B06

Lorenzo Odone, 30, whose story of illness, impairment and the determined effort by his parents to save his life were depicted in the 1992 movie "Lorenzo's Oil," died yesterday at his home in Fairfax County.

His father, Augusto Odone, said that Mr. Odone apparently died of aspiration pneumonia, which can result from a foreign material inhaled into the lungs.

Mr. Odone had been severely disabled by a genetic disease known as adrenoleukodystrophy, or ALD. The rare ailment principally afflicts males and usually results in brain failure and death.

Augusto Odone said last night that his son had always been brave and that "everyone who knew him was crying at his death."

He emphasized that his son's death was "not the result of the disease."

The movie "Lorenzo's Oil" portrays the father's discovery that ALD patients could be helped by a derivative of olive and rapeseed oils.

In an interview last night, Augusto Odone said that an article in a scientific journal asserts that if the treatment is given before symptoms develop, children can escape the effects of the disease.

The discovery came too late for Mr. Odone, who was condemned to silence by what appeared to be the irreversible neurological effects of the disease.

After Mr. Odone's condition was diagnosed more than 20 years ago, his parents learned that children typically lived only a few years after diagnosis. They declined to accept that fate for their son and began searching for a treatment.

The treatment they devised came after hours of poring over obscure scientific journals and obtaining the counsel of many specialists. Although some experts said that the oil might be dangerous, the parents, noting their son's rapid deterioration, decided to take a chance. Augusto Odone credited his son's years of survival to the treatment.

Mr. Odone's mother, Michaela, who joined her husband and nurses in providing their son with constant care, died in 2000.

Augusto Odone said last night that he intended to have Lorenzo cremated so his ashes could be mixed with his mother's.

In addition to Mr. Odone's father, survivors include a brother and a sister.